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Open for recruitment: UK-first ELSA study to screen 20,000 children for type 1 diabetes

We’re delighted to announce that a new trial screening programme for type 1 diabetes, the ELSA study, which we’re funding in partnership with JDRF, is open for recruitment today. The first research of its kind in the UK will identify children at high risk of type 1 diabetes, laying the groundwork for the development of a potential UK-wide screening programme. This could transform the way the condition is identified and managed in its earliest stages.

The ELSA study (EarLy Surveillance for Autoimmune diabetes) will recruit 20,000 children aged between three and 13 to assess their risk of developing type 1 diabetes.

Spotting early warning signs through the ELSA study

Type 1 diabetes is caused by an immune system attack on insulin-producing cells in the pancreas. It’s possible to spot the very earliest signs that the immune system is planning an attack and find people who have a high risk of developing type 1 diabetes in the future.

The ELSA study will screen children for these signs, called autoantibodies, using blood tests. Autoantibodies are tools used by the immune system to mark insulin-producing cells for destruction. They can appear in the blood years, or sometimes decades, before people begin to experience any symptoms and receive a type 1 diagnosis.

Your risk of type 1 diabetes increases with the number of different autoantibodies found in the blood. People with two or more autoantibodies have an 85% chance of developing type 1 diabetes within 15 years, and it’s almost certain that they will develop the condition in their lifetime.

The ELSA study team will offer children found to be at risk and their families support and education, including information on symptoms, insulin injections and carb counting. This will help prepare them for a future diagnosis of type 1 diabetes. Families can also be followed up and monitored in the long term, and potentially start insulin treatment sooner.

Find out how your child can take part in the ELSA study and sign up today

The earliest, safest diagnosis

It’s essential type 1 diabetes is diagnosed quickly to avoid life-threatening complications. However, over a quarter of children aren’t diagnosed with type 1 diabetes until they are in diabetic ketoacidosis (DKA), a potentially fatal condition that requires urgent hospital treatment. Research in Europe and the USA has found that the extra support and monitoring type 1 diabetes screening programmes can offer dramatically reduces the risk of being diagnosed in DKA.

While the only treatment we currently have for type 1 diabetes is insulin, there are new immunotherapy treatments being tested that could prevent or delay the condition. Children found to be at high risk as part of ELSA could be invited to take part in research testing these treatments. One immunotherapy drug, called teplizumab, has been found to delay a diagnosis of type 1 diabetes by up to three years. It's currently being reviewed for use in the UK.

The ELSA study team will interview families and healthcare professionals who take part in the study to understand their views on screening and the most effective way to deliver a future screening programme. These insights will be important in making the case for widespread routine screening for type 1 diabetes in the UK.

Jayne and Mike Fairclough from St Helen’s have two daughters, Libby, aged 6, and Lottie, aged 2. Libby was diagnosed with type 1 diabetes in 2019. Jayne said:

When Libby was diagnosed with type 1 diabetes, our world was turned upside down. Looking back all the signs were there, but we knew nothing about diabetes and never thought it would be that.

“We weren’t prepared for what was to come – diabetes took over our lives. Libby would cry with every blood test, every injection – it was really tough for all of us. When she was first diagnosed, I thought I’d never get my little girl back, but together we’ve learned how to manage her diabetes and it’s just part of our lives. Now Libby has a pump and she’s thriving. There’s nothing she can’t do.

“If we had known Libby was at risk of type 1 diabetes, we might have spotted the signs sooner and been able to prepare ourselves for her diagnosis. Screening for type 1 diabetes could help families avoid the shock diagnosis that we went through. If our youngest daughter, Lottie is also at risk, we’d want to know. The ELSA study gives us so much hope for a better future for children who are at risk of type 1 diabetes.”

Professor Parth Narendran and Dr Lauren Quinn, who lead the ELSA study at the University of Birmingham, said:

As general population screening programmes for type 1 diabetes emerge around the world, we need to explore how best to screen children here in the UK. The ELSA study will ask important questions about the best ways to recruit, and explore the experiences of families who take part.

“Screening children can reduce their risk of DKA at diagnosis by about five times and can help them and their families settle into the type 1 diagnosis better. We know the value of identifying people at risk of type 1 diabetes and we have the tools to do so – now we need to understand how best to implement them in the UK.

“We are extremely grateful to our funders, Diabetes UK and JDRF. We hope ELSA will lead to the roll-out of a type 1 diabetes early detection programme for children in the UK and encourage families with children at a suitable age to consider taking part. To find out more about the ELSA study and to sign up.” 

Dr Elizabeth Robertson, Director of Research at Diabetes UK, said:

“We’re extremely proud to fund this pioneering research programme in partnership with JDRF. Identifying children at high risk of type 1 diabetes could put them and their families on the front foot, helping ensure a safe and soft landing into an eventual diagnosis, avoiding DKA and reducing the risk of life-altering complications.

“Every day without type 1 diabetes counts. Extra years without the condition means a childhood no longer lived on a knife-edge of blood sugar checks and insulin injections, free from the relentlessness and emotional burden of type 1 diabetes.

“With the first immunotherapy for type 1 diabetes currently under review in the UK, the era of being able to strike early to delay type 1 diabetes is within reach. The success of the next generation of preventative type 1 diabetes treatments depends on reaching as many people as possible who could benefit, and this can only be achieved through screening programmes. The ELSA trial will offer vital insights that could make screening for type 1 diabetes a reality in the UK, offering hope of a better future for people who are at risk of developing the condition in their lifetime.”

Rachel Connor, Director of Research Partnerships at JDRF UK, said:

“We are in a hugely exciting period of type 1 diabetes research where we have a host of drugs that target the immune system progressing rapidly through clinical trials. We are demonstrating that it is possible to delay the need for intensive insulin treatment in those most at risk. When these drugs become available in the UK, we need to be ready to use them straight away.

“Until now, the best way to find people who might be starting to develop type 1 diabetes was through research with family members of people with type 1. But, as around four out of every five people diagnosed with type 1 diabetes have no family connection to the condition, this approach missed far too many people.

“The ELSA study will be pivotal in finding children who will benefit most from the latest immunotherapy drugs. It will also prepare families for the signs of type 1 diabetes, so that no child has to go through the trauma of being diagnosed in crisis with life-threatening DKA. This is why we are delighted to be building on the screening projects we have already supported around the world by joining with Diabetes UK to support research into screening for type 1 diabetes in the UK.”

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